J Rehabil Med 2009; 41: 375381

ORIGINAL REPORT

INACTIVE LIFESTYLE IN ADULTS WITH BILATERAL SPASTIC

CEREBRAL PALSY

Channah Nieuwenhuijsen, MSc1, Wilma M. A. van der Slot, MD1,2, Anita Beelen, PhD3, J. Hans
Arendzen, MD, PhD4, Marij E. Roebroeck, PhD1, Henk J. Stam, MD, PhD, FRCP1, Rita J. G.
van den Berg-Emons, PhD1 and the Transition Research Group South West Netherlands
From the 1Department of Rehabilitation Medicine, Erasmus Medical Centre, 2Rijndam Rehabilitation Centre, Rotterdam,
3
Rehabilitation Centre de Trappenberg, Huizen and 4Leiden University Medical Centre, Leiden, The Netherlands

Objective: To quantify the level of everyday physical activity
in adults with bilateral spastic cerebral palsy, and to study
associations with personal and cerebral palsy-related char-
acteristics.
Participants and methods: Fifty-six adults with bilateral
spastic cerebral palsy (mean age 36.4 (standard deviation
(SD) 5.8) years, 62% male) participated in the study. Ap-
proximately 75% had high gross motor functioning. Level
of everyday physical activity was measured with an acceler-
ometry-based Activity Monitor and was characterized by: (i)
duration of dynamic activities (composite measure, percent-
age of 24 h); (ii) intensity of activity (motility, in gravitation-
al acceleration (g)); and (iii) number of periods of continu-
ous dynamic activity. Outcomes in adults with cerebral palsy
were compared with those for able-bodied age-mates.
Results: Duration of dynamic activities was 8.1 (SD 3.7) %
(116 min per day), and intensity of activity was 0.020 (SD
0.007) g; both outcomes were significantly lower compared
with able-bodied age-mates. Of adults with cerebral palsy,
39% had at least one period of continuous dynamic activities
lasting longer than 10 min per day. Gross motor functioning
was significantly associated with level of everyday physical
activity (Rs 0.34 to 0.48; p0.01).
Conclusion: Adults with bilateral spastic cerebral palsy, es-
pecially those with low-level gross motor functioning, are at
risk for an inactive lifestyle.
Key words: cerebral palsy, motor activity, ambulatory monitoring.
J Rehabil Med 2009; 41: 375381
Correspondence address: C. Nieuwenhuijsen, Erasmus MC,
Department of Rehabilitation Medicine, PO Box 2040, NL-3000
CA Rotterdam, The Netherlands. E-mail: c.nieuwenhuijsen@
erasmusmc.nl
Submitted July 29, 2008; accepted December 4, 2008
INTRODUCTION
Cerebral palsy (CP) is one of the most frequently occurring
conditions in childhood (1). Recently, a new definition has been
developed in which CP is defined as a group of permanent
disorders of the development of movement and posture, caus-
ing activity limitation, that are attributed to non-progressive
disturbances that occurred in the developing foetal or infant
brain. The motor disorders of cerebral palsy are often accom-
panied by disturbances of sensation, perception, cognition,
communication, and behaviour, by epilepsy, and by secondary
musculoskeletal problems (2). Prevalence ranges from 1.39
to 2.80 per 1000 live births in Europe (1). The prevalence in
the Netherlands is 1.51 per 1000 persons, but appears to be
increasing over time (3). Life expectancy for persons with CP
has increased over the past few decades and is close to that
of the unaffected population for well-functioning adults with
CP (4). The most frequently occurring type of CP, the spastic
form, is characterized by velocity-dependent resistance to
passive movement (5).
Children with CP tend to receive much physical rehabilita-
tion at a young age, but this attention decreases significantly
with advancing age. Several studies report decreased contact
with the healthcare system following completion of formal
education, and care is often disrupted when disabled persons
enter adulthood (6, 7). However, many persons with CP return
to rehabilitation care as adults for treatment of worsening
symptoms such as contractures, pain and fatigue (8, 9).
This deterioration over time may lead to difficulties in per-
forming daily activities (10) and, consequently, to an inactive
lifestyle, with possible detrimental effects on physical fitness
and symptoms (11). A negative cycle may develop: inactivity
leads to lower physical fitness and worsening of symptoms,
which in turn lead to further inactivity. Also, comparable to
persons with other disabilities, inactivity may negatively influ-
ence health-related quality of life (12) and may increase the
risk of cardiovascular disease, diabetes and cancer (13).
Despite the expectation that persons with disabilities are at a
high risk for an inactive lifestyle (14), only limited information
is available regarding the level of everyday physical activity
(PA) of adults with CP. Some evidence exists that diplegic
children (15) and adolescents with certain forms of CP (16) are
less physically active than able-bodied age-mates. Maher and
colleagues (16) also report a strong association between level
of everyday PA and gross motor functioning, with lower gross
motor functioning associated with a lower level of everyday
PA. These findings have been corroborated by studies of PA
level in adolescents with Gross Motor Functioning Classifica-
tion System (GMFCS) level III vs those with GMFCS level I
or II (17) and for non-ambulatory vs ambulatory adolescents

2009 The Authors. doi: 10.2340/16501977-0340 J Rehabil Med 41

Journal Compilation 2009 Foundation of Rehabilitation Information. ISSN 1650-1977
376 C. Nieuwenhuijsen et al.
(18). In adults, van der Slot et al. (19) reported no differences
in level of everyday PA between persons with unilateral spastic
CP and able-bodied age-matched controls.
To our knowledge, no objective data are available regarding
level of everyday PA for adults with bilateral spastic CP. The
aims of this study were, therefore: (i) to quantify the level of
everyday PA for adults aged 2545 years with bilateral spastic
CP, and compare them with the levels of able-bodied age-
mates; and (ii) to determine whether personal and CP-related
factors are associated with level of everyday PA, in order to
identify subgroups at increased risk for inactivity.
METHODS
Study sample
We recruited eligible participants from 10 rehabilitation centres
throughout the western and central regions of the Netherlands and
via the Association of Physically Disabled Persons and Their Parents
(BOSK). Inclusion criteria were a diagnosis of bilateral spastic CP
(diplegia or quadriplegia) and age between 25 and 45 years. Exclu-
sion criteria were full dependence on electric wheelchair propulsion,
comorbidities impacting on PA, contraindications to progressive
maximal ergometer testing (this study also evaluated maximal exercise
tests for other purposes), legal inability, inadequate comprehension of
the Dutch language, and cognitive impairment preventing understand-
ing of the study protocol. An informational letter and invitation to
participate was sent to eligible participants; a second letter was sent
4 weeks later to non-responders. All participants gave their written
informed consent for participation. The study was approved by the
medical ethics committee of the Erasmus Medical Centre and all the
participating rehabilitation centres.
Measurement instruments
Personal and CP-related characteristics. We assessed several personal
and CP-related characteristics: age, gender, educational level, student/
employment status, housing status, limb distribution (diplegia or
quadriplegia), gross motor functioning, and spasticity.
We subdivided educational level into: (i) low, including prevoca-
tional practical education or less; (ii) medium, including prevocational
theoretical education and upper secondary vocational education; and
(iii) high, including secondary non-vocational education, higher
education and university.
We classified gross motor functioning according to the GMFCS,
which is based on spontaneous movements related to sitting and walk-
ing (20). The GMFCS identifies 5 levels ranging from walks without
restrictions (level I) to self-mobility is severely limited even with
use of assistive technology (level V). The GMFCS was originally
developed and validated for children (20), but also has demonstrated
reliability and validity for describing gross motor function in adults
with CP (21, 22).
We assessed spasticity in 4 lower extremity muscle groups (hip
adductors, hamstrings, rectus femoris and gastrocnemius) using the
Tardieu Scale for clinical assessment of passive joint range of mo-
tion (ROM) (23). The ROM for 2 different velocities was recorded,
then the difference in joint angle between these 2 measurements was
calculated. The intensity of muscle reaction to stretch was scored on
a scale ranging from no resistance in whole ROM (0) to presence visual analogue scale (VAS), which has demonstrated reliability and
of greater than 5 cycles of clonus (5). In a recent review, Scholtes
et al. (24) concluded that the Tardieu Scale is suitable for measuring
spasticity in children with CP, although it is time-consuming and
lacks the standardization of muscle stretch velocity evaluation. We
defined muscle spasticity as a muscle reaction intensity score of 2, 3,
4 or 5; a difference in joint angle of greater than or equal to 15, or
both. We measured spasticity bilaterally, and when differences were
found, values of the most affected limb were used. The numbers of
J Rehabil Med 41
spastic muscle groups in the lower extremities on one side of the
body are reported.
Level of everyday physical activity. To measure the level of everyday
PA, we used an Activity Monitor (AM) (Temec Instruments BV,
Kerkrade, The Netherlands). The AM is based on long-term ambulatory
monitoring of signals from body-fixed accelerometers. The device con-
sists of 46 accelerometers, a portable data recorder (1594.5 cm;
weight 700 g) and a computer with analysis software (25). The
accelerometer signals allow calculation of movement duration, and
rate and timing of activities associated with mobility (1 sec resolu-
tion). Stationary activities, such as lying, sitting and standing, can be
distinguished from dynamic activities, such as walking, stair climb-
ing, running, cycling, wheelchair propulsion (including hand-biking)
and general non-cyclical movement. Furthermore, the variability of
the acceleration signal (motility) can be measured as an indicator of
body-segment movement intensity in which body motility addresses
mean motility over a 24-h period (representing duration and intensity
of everyday activity) and motility during walking and wheelchair
propulsion (representing walking speed and wheelchair propulsion
speed, respectively) ((25), unpublished data first author). The AM has
been validated to quantify mobility-associated activities and to detect
inter-group differences in levels of everyday PA (25, 26).
Participants wore the AM for 48 continuous hours on randomly
selected weekdays. Participants were instructed to perform their
ordinary activities except they were not permitted to swim or bathe.
To avoid measurement bias, we fitted AM instruments in participants
homes and explained the principles of the AM to the participants after
the measurement.
For ambulatory participants, we used 4 uniaxial piezo-resistive ac-
celerometers (Analog Devices, Breda, The Netherlands, adapted by
Temec Instruments, Kerkrade, The Netherlands; size: 1.51.51 cm).
We attached one accelerometer to the skin of each thigh to detect
anterior-posterior direction while standing, and two accelerometers to
the skin of the sternum: one to detect anterior-posterior direction, and
one to detect longitudinal direction. For participants using wheelchairs,
additionally to the 4 sensors that were described above, we attached
one accelerometer to each wrist to detect longitudinal direction while
seated with the forearm horizontal in the mid-pronation/supination
position.
Accelerometers were connected to the AM and worn in padded
bags around the waist. Accelerometer signals were stored digitally
on a PCMCIA flash card with a 32-Hz sampling frequency. Measure-
ments were downloaded onto a computer for kinematic analysis using
Vitagraph Software. A detailed description of the activity detection
procedure has been described elsewhere (25).
We measured the following data per 24-h period: (i) duration
of dynamic activities as a percentage of a 24-h period (composite
measure of separately detected activities of walking, wheelchair
propulsion, running, cycling, and general movement); (ii) number of
transitions (includes all transitions except lying transitions between
prone and supine positions); (iii) intensity of activities: (iiia) mean
motility (in gravitational acceleration (g)), which reflected both
duration and intensity of activity; (iiib) motility during walking;
(iiic) motility during wheelchair propulsion; and (iv) distribution of
continuous dynamic activity periods (510 sec; 1030 sec; 3060
sec; 12 min; 25 min; 510 min; or greater than 10 min). We also
computed aggregated periods of 15 min and greater than 5 min of
continuous dynamic activities. In addition to AM measurement, we
assessed participants satisfaction with level of everyday PA using a
validity (27). We asked participants to mark a 10-cm line according
to their level of satisfaction with their current level of everyday
PA (0 denotes extremely dissatisfied and 10 denotes extremely
satisfied).
Data analysis
Because there were no significant differences in the duration of
dynamic activities between the first and second day of the measure-
 Inactivity in adults with cerebral palsy 377

ment (paired samples t-test, p=0.89), results were averaged over the Table I. Personal and cerebral palsy-related characteristics
2 measurement days. Descriptive statistics were used to summarize
level of everyday PA and satisfaction with level of everyday PA for Participants
the total group and for subgroups. To determine potential deficits in Characteristics (n=56)
level of everyday PA, participant data on dynamic activity duration Age, years, mean (standard deviation) 36.4 (5.8)
and mean motility were compared with those of able-bodied age-mates 2529 years, n (%) 10 (18)
(age5 years) (n=45) using independent-samples t-tests. These 3034 years, n (%) 12 (21)
age-mates were part of a large reference sample of persons without 3539 years, n (%) 15 (27)
known impairments who had previously been measured with the above 4045 years, n (%) 19 (34)
described AM protocol. Gender, n (%)
We examined associations between 3 main aspects of the level of Male 35 (62)
everyday PA (duration of dynamic activities, mean motility and aggre-
Female 21 (38)
gate number of periods of continuous dynamic activities (15 min, and
Limb distribution, n (%)
greater than 5 min)) and personal and CP-related characteristics (age,
Diplegia 30 (54)
gender, educational level, limb distribution, gross motor functioning,
Quadriplegia 26 (46)
and spasticity), using Spearmans correlation coefficients (Rs). When
GMFCS, n (%)*
significant associations were found, we examined differences between
subgroups using analysis of variance (ANOVA) with a Scheffe post-hoc Level I 13 (23)
test. Because there were few persons in GMFCS level IV and none Level II 28 (50)
in GMFCS level V, GMFCS levels III and IV were combined for the Level III 11 (20)
purpose of analysis. Statistical analyses were performed using SPSS Level IV 4 (7)
for Windows version 12.0.1. A p-value of less than or equal to 0.05 Level V 0 (0)
was considered significant. Spasticity in one lower extremity, n (%)
2 muscle groups 5 (10)
3 muscle groups 19 (38)
4 muscle groups 26 (52)
RESULTS Educational level, n (%)
Low 15 (27)
Personal and CP-related characteristics
Medium 24 (43)
Of 226 eligible participants, 56 participated in the final study High 17 (30)
Student/employment, n (%)
(response rate 25%). Reasons for refusal to participate were
Student 2 (4)
lack of time, lack of interest in the study, and burden to the Remunerative employment 39 (70)
adult with CP or caregiver. There were no differences between Receiving social benefits 15 (26)
participants and non-participants regarding gender or affected Housing status, n (%)
limb distribution. On average, participants were older than non- Living with partner/others 16 (29)
participants (mean difference 2.5 years; t-test, p0.01). Living alone 36 (64)
Living with parents 4 (7)
The mean participant age was 36.4 (standard deviation
(SD) 5.8) years; 62% were male. Affected limb was evenly *Wheelchair-users were distributed over GMFCS level II (n=4) and
GMFCS level IV (n=3).
distributed between quadriplegics and diplegics (Table I).
Spasticity was not assessed in 6 participants (n=50).
Most participants (73%) had high gross motor functioning GMFCS: Gross Motor Functioning Classification System.
(GMFCS level I or II). Seven participants used wheelchairs;
3 GMFCS level IV participants used wheelchairs as their pri-
mary mode of ambulation, and 4 GMFCS level II participants for 57% of participants (range 06), and 39% had at least one
used wheelchairs for long distances or participation in sports. period per day lasting longer than 10 min (range 02).
All participants demonstrated spasticity in 2 or more muscle The mean level of satisfaction with level of everyday PA
groups in one lower extremity. Nearly half of participants had measured 6.7 (SD 2.3) cm on a scale of 010 cm, or moderate
a medium level of education and most were employed (70%). satisfaction (Table II). Level of satisfaction was not related to
Sixty-four percent of participants lived alone, and 29% lived the 3 main aspects of level of everyday PA (Rs range 0.13
with a partner or others. to 0.09).

Level of everyday physical activity Comparison with able-bodied age-mates

On average, participants had a mean dynamic activity duration
of 8.1 (SD 3.7) %, which corresponds to 1 h and 56 min of
dynamic activities per day (Table II). With regard to intensity
of activities, we found a mean motility of 0.020 (SD 0.007) g.
Motility during walking was 0.155 (SD 0.037) g, and motility
during wheelchair propulsion was 0.034 (SD 0.011) g.
Table III shows the distribution of periods of continuous dy-
namic activities. Almost all participants had at least one period
per day of continuous dynamic activities lasting 15 min. Peri-
ods of at least 5 min of continuous dynamic activity occurred
In comparison with able-bodied age-mates, adults with CP had
significantly shorter durations of dynamic activity (8.1% vs
10.9%, respectively; p0.01), and significantly lower mean
motility (0.020 g vs 0.027 g; p0.01) (Fig. 1a and b). Women
with CP had significantly shorter durations of dynamic activity
compared with able-bodied women (8.4% vs 12.2%, respectively;
p0.01). For men, this difference was not statistically significant
(7.8% vs 9.4%, p=0.11). In both women and men, mean motility
was lower compared with able-bodied age-mates (women: 0.021
g vs 0.028 g, p=0.03; men: 0.019 g vs 0.027 g, p0.01).

J Rehabil Med 41
378 C. Nieuwenhuijsen et al.

Table II. Level of everyday physical activity, by level of gross motor functioning. All values are presented as means (standard deviation)
Level of gross motor functioning
All GMFCS I GMFCS II GMFCS IIIIV
(n=56) (n=13) (n=28) (n=15)
Duration of static activity (% of 24 h) 91.9 (3.7) 89.7 (2.6)a 91.7 (3.7) 94.3 (3.1)
Lying 35.2 (5.9) 36.4 (3.5) 34.2 (4.9) 36.0 (8.8)
Standing 9.7 (5.3) 13.0 (4.8) 10.8 (4.0) 4.7 (4.5)
Sitting 47.1 (9.4) 40.3 (6.7) 46.7 (7.2) 53.6 (10.9)
Duration of dynamic activities (% of 24 h) 8.1 (3.7) 10.3 (2.6)a 8.3 (3.7)c 5.7 (3.1)
General movement 2.0 (1.5) 2.1 (1.4) 2.0 (1.2) 2.3 (2.0)
Walking 5.1 (3.1) 7.3 (1.9) 5.5 (2.9) 2.3 (2.1)
Wheelchair propulsion 0.2 (0.7) 0 (0) 0.2 (0.6) 0.4 (1.0)
Cycling 0.8 (1.0) 0.8 (0.7) 0.7 (1.0) 0.7 (1.2)
Running 0 (0.5) 0 (0.1) 0 (0) 0 (0)
Mean motility, g* 0.020 (0.007) 0.024 (0.006)a 0.020 (0.007)c 0.015 (0.005)
Motility during walking, g* 0.155 (0.037) 0.168 (0.030) 0.160 (0.035) 0.133 (0.042)
Motility during wheelchair propulsion, g* 0.034 (0.011) 0.037 (0.015) 0.032 (0.006)
Number of transitions 123 (45) 136 (35) 134 (38) 92 (53)
Periods of 15 min continuous dynamic activities 16 (11) 21 (7) 17 (13) 12 (9)
Periods of greater than 5 min continuous dynamic activities 1 (1) 2 (2)b 1 (2) 1 (1)
VAS satisfaction with physical activity 6.7 (2.3) 6.9 (2.3) 6.8 (2.3) 6.5 (2.2)
*Mean motility and motility during walking were assessed for ambulators only (n=49). Motility during wheelchair propulsion was assessed for
those using a wheelchair during the measurement (n=7: 4 GMFCS level II participants and 3 GMFCS level IIIIV participants). Motility is
expressed in g (1g=9.81 m/s2).
a
Significant difference between GMFCS level I and GMFCS level IIIIV at p0.01.
b
Significant difference between GMFCS level I and GMFCS level IIIIV at p0.05.
c
Tendency for difference between GMFCS level II and GMFCS level IIIIV at p<0.10.
Transitions: all transitions between postures except between lying transitions. Associations with personal and CP-related characteristics were
explored for bold variables.
GMFCS: Gross Motor Functioning Classification System; VAS: visual analogue scale.

Factors associated with level of everyday physical activity

Gross motor functioning was the only factor significantly
associated with the 3 main aspects of level of everyday PA
(Table IV). ANOVA and post-hoc analyses revealed significant
differences between GMFCS level I and GMFCS level III/IV
participants in duration of dynamic activities (p0.01), mean
motility (p0.01), and number of periods of continuous dy-
namic activities greater than 5 min (p0.05). The difference
in number of 15 min periods of continuous dynamic activities
was not significant (p=0.10) (Table II).
Although not statistically significant, duration of dynamic
activities and mean motility were higher in GMFCS level II

Table III. Periods of continuous dynamic activities (510 sec; 1030

sec; 3060 sec; 12 min; 25 min; 510 min; and >10 min)
Number of participants with at
least one period of continuous
dynamic activities per day Number of periods
n (%) Mean (SD) Range
510 sec 56 (100) 112 (43) 39204
1030 sec 56 (100) 128 (53) 35279
3060 sec 56 (100) 40 (30) 5197
12 min 55 (98) 13 (9) 042 Fig. 1. (a) Duration of dynamic activities in adults with bilateral spastic
25 min 52 (93) 4 (4) 015 cerebral palsy and able-bodied age-mates, as percentage of a 24-h period.
510 min 32 (57) 1 (1) 06 (b) Intensity of activities (mean motility) in adults with bilateral spastic
>10 min 22 (39) 0 (1) 02 cerebral palsy and in able-bodied age-mates, expressed in gravitational
SD: standard deviation. acceleration (1g=9.81 m/s2).

J Rehabil Med 41

Table IV. Spearman correlations (Rs) between personal and cerebral palsy-related characteristics and level of everyday physical activity
Duration of dynamic
activities Mean
(% of 24 h) motility (g)
Age 0.00 0.11
Gender 0.04 0.09
Level of education 0.12 0.09
Limb distribution 0.24 0.25
GMFCS 0.48* 0.46*
Spasticity 0.01 0.09
*Significant association at p0.01.
GMFCS: Gross Motor Functioning Classification System. A higher GMFCS level indicates a lower level of gross motor functioning.
compared with GMFCS level III/IV participants (p=0.06 and
p=0.09, respectively). The number of 15 min and greater than
5 min periods of continuous dynamic activities did not differ
between GMFCS level II and GMFCS level III/IV participants
(p=0.32 and p=0.58). In addition, differences between GM-
FCS level I and GMFCS II were not significant for the 3 main
aspects of level of everyday PA.
DISCUSSION
This is the first study objectively measuring level of everyday
PA in adults with bilateral spastic CP. We have demonstrated
that adults with bilateral spastic CP, and particularly those with
low-level gross motor functioning, have inactive lifestyles
when compared with able-bodied age-mates. Personal and
CP-related characteristics other than gross motor functioning
were not associated with level of everyday PA.
Level of everyday physical activity in adults with CP
On average, participants were dynamically active for nearly
2 h per day (116 min), which is higher than levels reported in
a study of adults aged 1966 years, who were only active an
average of 52 min per day (28). However, this latter study used
self-report questionnaires, which may be susceptible to social
desirability and recall bias (29) and which may not capture
all activities of daily living that are challenging for disabled
persons (30). A previous study using the same measurement
procedures as the current study showed that ambulatory adults
with unilateral spastic CP aged 2535 years were dynami-
cally active for 152 min per day, a finding that did not differ
significantly from able-bodied age-mates (19). These results
were predictable given that study participants had near-normal
lower extremity muscle tone and therefore mobility-related
activities were not likely to be limited (19).
In contrast to findings in adults with unilateral CP (19),
adults with bilateral CP in our study were significantly less
physically active than able-bodied age-mates (excluding dif-
ferences in mean duration of dynamic activities for men with
CP and able-bodied age-mates, which were not significant).
The inactive lifestyle reported in this study is consistent with
studies of diplegic children (15) and adolescents (1618) in
which different measurement procedures, including doubly-
labelled water, step counts and questionnaires, demonstrated
Inactivity in adults with cerebral palsy 379
Periods of continuous dynamic Periods of continuous dynamic
activities of 15 min (n) activities of >5 min (n)
0.04 0.08
0.06 0.24
0.18 0.08
0.11 0.02
0.37* 0.34*
0.08 0.15
lower levels of everyday PA in persons with CP compared with
able-bodied age-mates.
In the present study, only 39% of participants had one or two
periods of continuous dynamic activities for at least 10 min per
day. Furthermore, only 57% had at least one period of continu-
ous dynamic activity lasting 510 min each day. To maintain
and promote health, able-bodied persons are recommended to
engage in 30 min of moderate intensity PA each day, which can
be divided into 10-min intervals (31). Most adults with CP in
our study did not achieve this minimum recommended level.
This failure to achieve PA goals has also been demonstrated
in other studies of adults with CP (28), and other physically
disabled persons (32). It is uncertain whether guidelines for the
general population are appropriate for persons with disabilities
such as CP (14). Also, the intensity of activities performed by
study participants is unknown. We suspect that adults with CP
experience greater physical strain compared with the general
population for similar activities; however, it is unknown if this
level of exertion meets the moderate intensity exercise goals.
Further research concerning the level of physical strain during
everyday PA is needed.
Low levels of everyday PA in adults with CP may be ex-
plained by higher energy requirements for daily activities
due to reduced muscle mass or inefficient locomotion (30).
Increased energy expenditure during everyday physical ac-
tivities such as walking has been reported in children (33)
and adults with CP (34). Published data also supports a rela-
tionship between level of everyday PA and energy expended
during walking (35). Factors such as a lower physical fitness,
fatigue, and pain may contribute to lower levels of everyday
PA. Another reason for lower activity levels could be limited
opportunities for activities such as sports participation. Several
barriers exist for disabled persons, including transportation,
access to equipment and facilities, and lack of awareness of
facilities (36).
We found no association between mean duration of dynamic
activities and satisfaction with level of everyday PA. This is
in contrast with findings of van der Slot and colleagues (19),
where adults with unilateral spastic CP with longer durations
of dynamic activities were less satisfied with level of everyday
PA. Adults with unilateral involvement may function at a higher
level of everyday PA, and may therefore perform more physi-
cally demanding tasks or set higher personal goals (and have
higher expectations) for functioning. The adults in our study
J Rehabil Med 41
380 C. Nieuwenhuijsen et al.
with bilateral involvement did not attain levels of dynamic
activities as high as the participants of the aforementioned
study and since they might not be capable of higher levels
of PA they may be quite satisfied with their current level of
everyday PA.
Factors associated with level of everyday PA
Only gross motor functioning was associated with level of
everyday PA in the present study. Inactive lifestyles were mostly
found in adults with low-level gross motor functioning (GMFCS
level IIIIV); this finding is consistent with previous studies
in adolescents with CP (1618). Evaluating our findings in the
context of the published literature is difficult because other
studies of adults with CP use different definitions and measure-
ment methods (37, 38), or do not report GMFCS level (19, 28,
38). Previous studies provide contradictory data regarding level
of everyday PA; some authors report no relationship (19, 38),
whereas others report that lower levels of motor functioning
are associated with less physical activity (28, 37).
In our study, level of everyday PA for persons with the high-
level gross motor function (GMFCS level I; mean duration of
dynamic activities 10.3%) was similar to that of able-bodied
age-mates (10.9%). Similar results have been found in adole
scents with CP (17) and, although not reported in their publica-
tion, in the study of van der Slot et al. (19) among adults with
unilateral spastic CP. In the latter sample, ambulatory adults
with GMFCS level I had a mean duration of dynamic activi-
ties of 11.1%, compared with 11.2% of able-bodied age-mates
(personal communication).
We did not find associations between other personal and
CP-related characteristics and level of everyday PA. The lack
of a relationship with age and educational level is consistent
with findings in adults with unilateral CP (19), but may also
be explained by homogeneity of personal characteristics in
the current study. Other studies in adolescents (16, 17, 36)
and adults (19) did not report gender differences in level of
everyday PA. To our knowledge, no information is available
regarding the relationship between level of everyday PA and
spasticity or affected limb distribution.
Limitations of the study
There are some noteworthy limitations of using the AM to
measure level of everyday PA. First, we measured level of
everyday PA over 2 days, but it has been suggested that at least
35 days of monitoring may be necessary to characterize ha-
bitual PA patterns (39). Secondly, we may have underestimated
the level of everyday PA because subjects could not swim
during measurements. In several studies, swimming is noted
as a frequent PA of persons with CP (37, 38). The size and the
wires of the AM may also have hampered some activities in
daily life. We asked the participants whether they performed
their regular activities during the measurement period and this
was confirmed, so influence of the measurement equipment
itself is considered to be little. Additionally, we focused on
comparing level of everyday PA with that of able-bodied age-
mates; because able-bodied age-mates also were not permitted
J Rehabil Med 41
to swim and were also possibly hampered by the measurement
equipment, these factors are believed not to have an effect on
study results. Fourthly, we may have overestimated the level
of everyday PA because of selection bias. Adults with CP who
are interested in PA and fitness (and may therefore have had
a higher level of everyday PA) may have been more likely to
participate than those with less interest and physical activity.
Implications for treatment
Our study shows that adults with bilateral spastic CP have in
active lifestyles compared with able-bodied age-mates, and that
they fail to achieve recommended activity levels. Because par-
ticularly adults with low-level gross motor functioning (GMFCS
level III or IV) have a low level of everyday PA, interventions
to increase the level of everyday PA should be targeted to this
group. However, even participants with GMFCS levels I and II
(who achieved mean duration of dynamic activities and mean
motility levels comparable to able-bodied age-mates) did not
achieve minimum exercise recommendations. Furthermore, we
expect that disabled persons may experience increased physical
complaints secondary to ageing and functional deterioration
(14, 40), which may lead to reduced levels of everyday PA.
We therefore believe that adults with a relatively high-level
gross motor functioning would also benefit from lifestyles that
are more active. Studies into the relationships between level
of everyday PA, health-related fitness, and fatigue and pain
symptoms may further elucidate the significance of physical
activity to optimize health in adults with CP.
ACKNOWLEDGEMENTS
We thank all the adults with CP who participated in this study. We also
acknowledge Kinder Fonds Adriaanstichting (KFA) and Johanna Kinder
Fonds (JKF) for their financial support (grant number 2003/0047-063). The
following members of the Transition Research Group South West Nether-
lands contributed to this study: Department of Rehabilitation Medicine,
Erasmus MC, University Medical Centre, Rotterdam (W. G. M. Janssen,
MD); Rijndam Rehabilitation Centre, Rotterdam (M. P. Bergen, MD PhD,
D. Spijkerman, MD, R. F. Pangalila, MD); Sophia Rehabilitation, The
Hague (W. Nieuwstraten, MD) and Delft (M. Terburg, MD); Rijnlands
Rehabilitation Centre, Leiden (H. vd Heijden-Maessen, MD); Department
of Rehabilitation Medicine, Leiden University Medical Centre; Rehabilita-
tion Centre de Waarden, Dordrecht (H. J. R. Buijs, MD); Foundation
of Rehabilitation Medicine Zeeland, Goes (B. Ras, MSc, Th. Voogt,
MSc). Additionally, the Department of Rehabilitation of Medical Centre
Rijnmond-Zuid, Rotterdam (P. J. Janssens, MD, PhD, J. Pesch, MD), VU
Medical Centre, Amsterdam (A. J. Dallmeijer, PhD), Rehabilitation Centre
de Trappenberg, Huizen, Rehabilitation Centre De Hoogstraat, Utrecht (A.
Wensink-Boonstra, MD) and BOSK, Association of Physically Disabled
Persons and their Parents collaborated in this study.
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